Autism, desperation and untested treatments

The Chicago Tribune has just published two important articles on how untested and potentially dangerous medical treatments are being used on autistic children by US parents desperate for a cure.

Many of these treatments are based on flimsy or non-existent evidence and they are being promoted by a subculture of parents of autistic children, who seem to overlap significantly with the anti-vaccination movement.

Dr. Carlos Pardo was trying to head off trouble.

The Johns Hopkins neurologist and his colleagues had autopsied the brains of people with autism who died in accidents and found evidence of neuroinflammation. This rare look inside the autistic brain had the potential to increase understanding of the mysterious disorder.

It also, he knew, could inspire doctors aiming to help children recover from autism to develop new experimental treatments — even though the research was so preliminary the scientists did not know whether the inflammation was good or bad, or even how it might relate to autism.

So when Pardo and his colleagues published their paper in the Annals of Neurology in 2005, they added an online primer that clearly explained their findings in layman’s terms and sternly warned doctors not to use them to develop treatments…

Citing Pardo’s research, doctors have treated children with a blood product typically reserved for people with severe immune system disorders like the one known as “bubble boy” disease. They have used it to justify sealing children with autism in pressurized bags and submarine-like metal chambers. Other children have been given a drug used to treat extremely rare genetic disorders.

The articles have several more examples of how scientific findings have been distorted or misinterpreted to justify dubious treatments (like chelation therapy, hormone suppressors and hyperbaric chambers) without any clear evidence for their benefit.

They’re both in-depth articles but are well worth your time as, along with Wired’s recent article on autism and antivaxxers, they are some of the best mainstream articles to track the growing trend for pseudo-medical autism treatments in recent times.

Link to ‘Risky alternative therapies have little basis in science’.
Link to ‘Science hijacked to support alternative therapies’ (both via MeFi)

One Comment

  1. Posted November 24, 2009 at 10:49 pm | Permalink

    The articles are indeed “some of the best mainstream articles to track the growing trend for pseudo-medical autism treatments in recent times.”
    As I often do for stories of this type, I’m keeping a running list or index of pro- and con- blog posts. This post is on the list.
    The list is here
    http://lizditz.typepad.com/i_speak_of_dreams/2009/11/the-unethical-treatments-that-autism-is-vaccine-injury-and-other-false-premises-gives-rise-to.html
    For readers new to the world of biomedical treatment, it is worth noting that a number of bloggers who are affected by autism are pro-science and pro-vaccine. They repudiate the world of “Age of Autism”, Generation Rescue, and “Defeat Autism Now!”(DAN!). I will mention a few (in no particular order) the group blog LeftBrain/RightBrain, Natural Variation, Countering Age of Autism, Autism News Beat and Club 166. There are many more.


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